No excuse: The right to a full life

Graduates with special needs Fazalina Latif (left) and Shafiqah Mohamad Asri (on wheelchair) with their loved ones celebrating their graduation at the 86th convocation of Universiti Teknologi Mara Shah Alam in April this year. FILE PIC

“WHILE I cannot do things that many people can do, it is not an excuse … my dream is to have my own design studio and to become an entrepreneur. It’s easy to say, and not impossible to make it happen. One thing is certain, I have to work harder than everyone else.”

These are the words of Ainaa Farhannah, 22, who has Spinal Muscular Atrophy, which progressively affects her muscle control. While she struggles with simple tasks many of us take for granted, Ainaa is not hampered by what she cannot do — instead she fights harder than anyone else, for her right to a full life.

The young woman in a wheelchair is full of creative energy and doesn’t let her disability define who she is. Last year, she graduated with a degree in graphic design and now she sells the canvas bags and pouches she designs through her Conteng by Ainaa studio. A few months ago, she participated in the #ThisAbility Makeathon that was co-organised by Unicef and Petrosains to showcase the creativity of young Malaysians with disabilities and their families at inventing assistive devices to improve their lives at home, during play or in school.

Children and youth like Ainaa do not see themselves as disabled. It is we who disable them. Separating them from society, giving them labels and placing limitations on what we think they can or cannot do.

Findings from a recent Unicef study “Childhood Disability in Malaysia: A study of knowledge, attitudes and practices” indicate that knowledge regarding childhood disability is low.

Society attaches shame to disability. In drawings, children with disabilities involved in this research depicted themselves as whole and healthy regardless of their disabilities.

Six of 10 people surveyed do not have enough information about children with disabilities. As an example, 13 per cent of people think children with disabilities needed less food in order to survive than those without disabilities. Forty-three per cent thought it was disruptive for their children to be in the same school with children with disabilities. This perception hinders an inclusive education system which caters to individual needs in the classroom as is provided in other Organisation for Economic Cooperation and Development countries.

People are less accepting of children with learning, mental and behavioural disabilities attending mainstream schools.

Speaking from experience, many parents told of educational facilities that inadequately provide for their children — often neglecting them and leaving them behind academically.

Naturally, children with disabilities feel sad, lonely, embarrassed and angry when they are excluded. They shared these feelings with us during the study.

Insufficient knowledge and incorrect information, disable these children. In any society, it is stigma and discrimination that become the main disablers.

Every Dec 3, we celebrate the International Day of Persons with Disabilities. This year, the theme adopted is “Transformation towards sustainable and resilient society for all”.

The 11th Malaysia Plan and roadmap towards the Sustainable Development Goals by 2030 pledges to close economic, social and environmental disparities and ensure no one living within its borders is left behind — this includes children with disabilities.

It is estimated that about 15 per cent of the population, or over four million people, are disabled.

However, only 550,000 persons with disabilities are registered with the Welfare Services Department. Not including them in economic development could result in wasted potential, which Malaysia cannot afford as it strives to become a developed country.

The first transformation we need to make for a sustainable and resilient society, is to remove the barriers that exist in our heart and minds and dispel misconceptions surrounding persons with disabilities.

With these obstacles removed, children with disabilities have the opportunity to develop and participate fully in society.

All children have a right to access quality education, to healthcare, to be protected from all forms of abuse and neglect, to have equal opportunities with their peers, to a childhood free of discrimination and stigma, to belong, to be included and to participate fully in society.

We need to ask “what can we do as a society to enable all children to reach their full potential?”

It is not enough to just focus on accessibility for children with disabilities. We have to be inclusive. We can build a ramp, but what good is the ramp if the child still going to be bullied/isolated in the playground, in school and other settings and left out of activities with other children?

Children should never be pitied or treated as charity cases. Children with disabilities should have increased access to high-quality services. Like every child, they have the right to live a life free from abuse and discrimination.

We want them to stop being hidden from the public, and to be given the space and the opportunity to stand confident, visible alongside us. They can contribute, and be a benefit — to themselves, their families, their community and their country.

The act of championing this cause is not just the responsibility of the government. Each of us has a role to play — from employment based on merit not charity, to ensuring our classrooms, hospitals, playgrounds and public spaces are inclusive and appropriate to persons with disability. We all have the ability and the influence to make the change needed in our society for the benefit of all children.

Today and every day, each of us can make the decision to enable children and youth like Ainaa.

In doing so we contribute to building a more prosperous, inclusive and peaceful society. One where no one is left behind.